Key actions for who in collaboration

Annex 1 Agenda

Consultation on Autism Spectrum Disorders and other developmental disorders

From raising awareness to building capacity WHO Executive Board Room

PROVISIONAL AGENDA

08:45 - 09:00	Registration
09:00 - 09:30	Welcome and introduction	Oleg Chestnov
09:30 - 09:35	Objectives of the meeting	Chiara Servili
09:35 - 10:20	Session 1: Current state, opportunities and challenges	WHO EB Resolution on Comprehensive and coordinated efforts for the management of ASD
		Shekhar Saxena
		Civil society response
		Andy Shih
		Current evidence and knowledge gaps
		Maureen Durkin
10:20 - 10:40	Coffee
10:40 - 12:10	Session 2: Advocacy, leadership and governance	Facilitators: – Michael Rosanoff and Andy Shih Initial comments by:
		– Merry Barua
		– Vladimir Kasatkin
		– Teruko Ujita
		– Saima Hossain
12:10 - 13:30	Lunch

This consultation is being organized by WHO with support from Autism Speaks

13:30 - 15:00	Session 3: Strategies for comprehensive and integrated health, education and social services	Facilitator: Myron Belfer Initial comments by: Julian Eaton
		– Lynne Jones
		– Connie Kasari
		– Chiara Servili
		– Shoba Srinath
15:00 - 15:15	Coffee
15:15 - 16:45	Session 4: Information systems, evidence and research	Facilitator: – Francesca Happe Initial comments by:
		– Tony Charman
		– Rajae El Aouad
		– Mayada Elsabbagh
		– Matilde Leonardi
		– Brian Reichow
		– Vianne Timmons
16:45 - 17:45	Session 5: Health promotion and impact on long term functioning	Facilitator: – Petrus De Vries Initial comments by:
		– Philipa Bragman
		– Facundo Chavez Penillas
		– Samanmali Sumanasena
		– Zsuzsanna Szilvasy
18:00	Reception

09:00 - 10:30	Session 6: Tools and strategies for early detection, assessment and follow up	Facilitator: Maureen Durkin Initial comments by: Petrus De Vries
		– Melissa Gladstone
		– Naila Khan
		– Vibha Krishnamurthy
		– Catherine Rice
10:30 - 10:45	Coffee
10:45 -12:15	Group work: Challenges, opportunities and priorities for action and research	Group 1: Advocacy, leadership and governance Group 2: Comprehensive and integrated
		care services Group 3:
		Tools and strategies for early detection,
		assessment and follow up Group 4:
		Health promotion and impact
		on long term functioning Group 5:
		Information system, evidence and research
12:30 - 13:30	Lunchtime seminar: Disabled or specially abled? Why business companies want to hire people with autism	Moderator: Shekhar Saxena Panelists: Liliana Mayo, Thorkil Sonne

and Anka Wittenberg





13:45 - 15:15 Feedback from groups

and discussion

15:30 - 17:00 Session 7: Facilitator:

Human capacity building – Eileen Hopkins and Norbert Skokauskas

Initial comments by:

• 
  Samira Al-Saad
  
• 
  Gauri Divan
  
• 
  Rosa Hoekstra
  
• 
  Yong-hui Jiang
  
• 
  Olayinka Omigbodun
  
• 
  Hemamali Perera
  

09:00 - 10:15	Session 8: The perspective of families	Facilitator: – Merry Barua
		Initial comments by:
		– Souad Al-Eryani
		– Erlinda Borromeo
		– Philipa Bragman
		– Hon Mike Lake MP
		– Isabelle Steffen
10:15 -10:30	Coffee
10:30 - 12:00	Round table on the role of partners	Facilitators: – John Peabody and Andy Shih
		Initial comments by:
		– HE Ms Alya Ahmed Saif Al-Thani
		Mohamed Al-Jalahma
		– Liri Berisha
		– Sergio Gulbenkian
		– HE Mr Abdul Hannan
		– Rain Henderson
		– Eileen Hopkins
		– Saima Hossain
		– Hon Mike Lake MP
		– Dominique McMahon
		– Frank Witney
12:00 - 12:45	Plenary discussion on outcomes and next steps	Facilitators: – Shekhar Saxena and Andy Shih
12:45 - 13:00	Conclusion

Annex 2 List of participants

ABA, Swiss Early Intervention Project in Autism (Swiss EIPA)

Ghadeer Barghouthy, Research Coordinator

Affymetrix, Inc., USA

Frank Witney, President and CEO

Albanian Children Foundation, Albania

Liri Berisha, President Lauresha Basha
Autism Hearts Foundation, USA Erlinda P. Borromeo, President Betty Buccat, Director

Joyce Diloy, Director

Action For Autism (AFA)/The National Centre for Autism, India

Merry Barua

Autism-Europe and Autistak Orszagos Szovetsege, Hungary

Zsuzsanna Szilvasy, President

Autism Speaks, USA

Suzanne and Bob Wright, Co-founders (Unable to attend) Andy Shih

Michael Rosanoff

Autism Suisse Romande, Switzerland

Isabelle Steffen Mandy Barker

Bangladesh Institute of Child Health (Dhaka Shishu Hospital), Bangladesh

Naila Z. Khan

Calouste Gulbenkian Foundation, Portugal

Sérgio Gulbenkian, Deputy Director

CBM International

Julian Eaton, Senior Mental Health Advisor

Centers for Disease Control and Prevention (CDC), USA

Catherine Rice

Centro Ann Sullivan del Peru (CASP), Peru

Liliana Mayo, Founder and Director General

CHANGE, UK

Philipa Bragman, Director

Clinton Foundation, USA

Rain Henderson, Deputy Director Duke University, USA

Lauren Franz Yong-hui Jiang

Fondation d’Harcourt, Switzerland

Maddalena Occhetta

Fondazione IRCCS Istituto Neurologico Carlo Besta, Italy

Matilde Leonardi

Grand Challenges Canada, Canada

Dominique McMahon

Harvard Medical School, USA

Myron Belfer

Harvard School of Public Health, USA

Lynne Jones

International Association for Child & Adolescent Psychiatry & Allied Professions (IACAPAP)

Olayinka Omigbodun, President

International Association for the Scientific Study of Intellectual and Developmental Disabilities (IASSIDD)

Vianne Timmons

International Center for Autism Research & Education (ICare4Autism), USA

Eileen Hopkins, Director of Global Initiatives, ICare4Autism Autism Consultant, Shirley Foundation

International Society for Autism Research (INSAR), USA/

King’s College London, UK

Francesca Happe, President and Director

Japan Developmental Disabilities Networks (JDD-Net), Japan

Teruko Ujita, Member, Committee Board of Experts Masako Suzuki

King’s College London, UK

Tony Charman

Kuwait Awqaf Public Foundation, Kuwait

Mohammed Al-Jalahma, Deputy Secretary General

Kuwait Centre for Autism, Kuwait

Samira Al-Saad, Director

McGill University, Canada

Mayada Elsabbagh

McMaster University, Canada

Briano Di Rezze

Ministry of Health and Family Welfare, Bangladesh/GAPH Initiative Bangladesh, Bangladesh

Saima Hossain, Chair, National Advisory Committee on Autism and Neurodevelopment Disabilities

Ministry of Health Lesotho

Michael Lebina, Director, Mental Services

Member of Parliament for Edmontonstry, Canada

Hon. Mike Lake, Member of Parliament for Edmonton-Mill Woods-Beaumont and Parliamentary Secretary to the Minister of Industry

National Institute of Mental Health and NeuroSciences (NIMHANS), India

Shoba Srinath, Dean

Office of the United Nations High Commissioner for Human Rights

Facundo Chávez Penillas


Open University, UK Rosa Hoekstra Ilona Roth

Permanent Mission of Bangladesh to the United Nations, Geneva

H.E. Mr Abdul Hannan, Ambassador, Permanent Representative

Permanent Mission of Bhutan to the United Nations, Geneva

Pema Tshomo, Second Secretary

Permanent Mission of Sovereign Order of Malta to the United Nations, Geneva

Jean-François Kammer, Counsellor

Permanent Mission of the State of Qatar to the United Nations, Geneva

H.E. Ms Alya Ahmed Saif Al-Thani, Ambassador, Permanent Representative

Pro Aid Autisme and Pro Aid Autism France

Pascal A. Diethelm, Geneva Representative

Public Health Agency of Canada, Canada

Jeannine Ritchot

Qure Healthcare, USA

John W. Peabody

Royal College of Psychiatrists, UK

Sherva Cooray, Chair, ICD-11/DID Working Group

Russian Rehabilitation Centre ‘Detstvo’, Russian Federation

Vladimir Kasatkin

Sangath, India

Gauri Divan

SAP AG, Germany

Anka Wittenberg, Senior Vice President

Specialist People Foundation (Specialisterne), Denmark

Thorkil Sonne, Founder

UCLA Graduate School of Education & Information Studies, USA

Connie Kasari

Ummeed Child Development Center, India

Vibha Krishnamurthy, Medical Director

University Mohamed V Souissi, Morocco

Rajae El Aouad

University of Cape Town, South Africa

Petrus de Vries

University of Colombo, Sri Lanka

Hemamali Perera

University of Kelaniya, Sri Lanka

Sumanmalis Sumanasena

University of Liverpool, UK

Melissa Gladstone

University College London, UK

David Skuse

University of Wisconsin-Madison, USA

Maureen Durkin

World Psychiatric Association – Child and Adolescent Psychiatric Section/

Trinity College, Ireland Norbert Skokauskas

Yale Child Study Center and University of Connecticut Health Center, USA

Brian Reichow

Yemen Foundation for Special Education and Autism/ Yemen Center for Autism, Yemen

Souad Al-Eryani, Chairman Ibrahim Al-doofi

Observers:

Laura Pacione, former intern, postgraduate trainees in psychiatry, McGill University, Canada

Rachel Lacrampe, Executive Assistant to Hon. Mike Lake, Parliamentary Secretary to the Minister of Industry

WHO Secretariat:

Claudina Cayetano, Mental Health, Substance Use and Human Security, Pan American Health Organization, Panama

Lucia Chen, Department of Mental Health and Substance Abuse, WHO Daniel Chisholm, Department of Mental Health and Substance Abuse, WHO

Bernadette Daelmans, Department of Maternal, Newborn, Child and Adolescent Health, WHO Natalie Drew, Department of Mental Health and Substance Abuse, WHO

Tarun Dua, Department of Mental Health and Substance Abuse, WHO

Philippe Duclose, Department of Immunization, Vaccines and Biologicals, WHO Metin Gülmezoglü, Department of Reproductive Health and Research

Kersten Gutschmidt Department of Public Health and Environment Adeline Loo, Department of Mental Health and Substance Abuse, WHO Alana Officer, Department of Injuries and Violence Prevention, WHO

Mark van Ommeren, Department of Mental Health and Substance Abuse, WHO Shekhar Saxena, Director, Department of Mental Health and Substance Abuse, WHO Chiara Servili, Department of Mental Health and Substance Abuse, WHO

Yutaro Setoya, Department of Mental Health and Substance Abuse, WHO Taghi Yasamy Department of Mental Health and Substance Abuse, WHO
For any further information please contact Dr Chiara Servili ([e-mail])

Annex 3 WHO Resolution EB133/4

133rd session EB133.R1

Agenda item 6.1 30 May 2013

Comprehensive and coordinated efforts

for the management of autism spectrum disorders

The Executive Board,

Having considered the report on the comprehensive and coordinated efforts for the management of autism spectrum disorders, ¹
RECOMMENDS to the Sixty-seventh World Health Assembly the adoption of the following resolution:
The Sixty-seventh World Health Assembly,

Recalling the Universal Declaration of Human Rights 1948; the Convention on the Rights of the Child 1989; the Convention on the Rights of Persons with Disabilities 2007; United Nations General Assembly resolution 62/139 declaring 2 April as World Autism Awareness Day; and United Nations General Assembly resolution 67/82 on addressing the socioeconomic needs of individuals, families and societies affected by autism spectrum disorders, developmental disorders and associated disabilities;

Further recalling, as appropriate, resolution WHA65.4 on the global burden of mental disorders and the need for a comprehensive, coordinated response from health and social sectors at the country level and resolution WHA66.9 on disability; resolution SEA/RC65/R7 adopted by the Regional Committee for South- East Asia on comprehensive and coordinated efforts for the management of Autism Spectrum Disorders (ASDs) and developmental disabilities; resolution EUR/RC61/R5 adopted by the Regional Committee for Europe on the WHO European Declaration and Action Plan on the Health of Children and Young People with Intellectual Disabilities and their Families; resolution EM/RC57/R.3 adopted by the Regional Committee for the Eastern Mediterranean on maternal, child and adolescent mental health: challenges and strategic directions 2010–2015 all of which emphasize a strong response to the needs of persons with developmental disorders including autism spectrum disorders and other developmental disorders;

Reiterating commitments to safeguard citizens from discrimination and social exclusion on the grounds of disability irrespective of the underlying impairment whether physical, mental, intellectual or sensory according to the Convention on the Rights of Persons with Disabilities, and promoting all persons’ basic necessities of life, education, healthcare and social security; and attention to vulnerable persons;

Noting that globally, an increasing number of children are being diagnosed with autism spectrum disorders and other developmental disorders and that it is likely that still more remain unidentified or incorrectly identified in society and in health facilities;

Highlighting that there is no valid scientific evidence that childhood vaccination leads to autism spectrum disorders; Understanding that autism spectrum disorders are life-long developmental disorders and are marked by the
¹ Document EB133/4.

presence of markedly abnormal or impaired development in social interaction and communication and a markedly restricted repertoire of activity and interest; manifestations of the disorder vary greatly depending on the developmental level and chronological age of the individual;

Further noting that persons with autism spectrum disorders continue to face barriers in their participation as equal members of the society, and reaffirming that discrimination against any person on the basis of disability is inconsistent with human dignity;

Deeply concerned about the rising number of identified individuals with autism spectrum disorders and other developmental disorders and that individuals with autism spectrum disorders and their families face major challenges including social stigma, isolation and discrimination, and children and families in need, especially in low resource contexts, often have poor access to appropriate supports and services;

Acknowledging the comprehensive mental health action plan 2013–2020 and, as appropriate, the policy measures that are recommended in resolution WHA66.9 on disability, which can be particularly instrumental for developing countries in the scaling up of care for autism spectrum disorders and other developmental disorders;

Recognizing the need to create or strengthen, as appropriate, health systems that support all persons with disabilities, mental health and developmental disorders, without discrimination;

1. 
   URGES Member States:
   
   1. 
      to give appropriate recognition to the special needs of the individuals affected by autism spectrum disorders and other developmental disorders in policies and programmes related to early childhood and adolescent development, as part of a comprehensive approach to address child and adolescent mental health and developmental disorders;
      
   2. 
      to develop or update, and implement relevant policies, legislation, and multisectoral plans as appropriate, in line with resolution WHA65.4, supported by sufficient human, financial and technical resources to address issues related to autism spectrum disorders and other developmental disorders; as part of a comprehensive approach to supporting all persons living with mental health issues or disabilities;
      
   3. 
      to support research and public awareness raising and stigma removal campaigns consistent with the Convention on the Rights of Persons with Disabilities;
      
   4. 
      to increase the capacity of health and social care systems, as appropriate, to provide services for individuals and families with autism spectrum disorders and other developmental disorders;
      
   5. 
      to mainstream into primary health care services the promotion and monitoring of child and adolescent development in order to ensure timely detection and management of autism spectrum disorders and other developmental disorders according to national circumstances;
      
   6. 
      to shift systematically the focus of care away from long-stay health facilities towards community-based, non-residential services;
      
   7. 
      to strengthen different levels of infrastructure for comprehensive management of autism spectrum disorders and other developmental disorders, as appropriate, including care, education, support, intervention, services and rehabilitation;
      
   8. 
      to promote sharing of best practices and knowledge about autism spectrum disorders and other developmental disorders;
      
   9. 
      to promote sharing of technology to assist developing countries in the diagnosis and treatment of autism spectrum disorders and other developmental disorders;
      

10. 
    to provide social and psychological support and care to families affected by autism spectrum disorders and to include persons with autism spectrum disorders and developmental disorders and their families within disability benefit schemes where available and as appropriate;
    
11. 
    to recognize the contribution of adults living with autism spectrum disorders in the workforce, continuing to support workforce participation in partnership with the private sector;
    
12. 
    to identify and address disparities in access to services for persons with autism spectrum disorders and other developmental disorders;
    
13. 
    to improve health information and surveillance systems that capture data on autism spectrum disorders and other developmental disorders, conducting national level needs assessment as part of the process;
    
14. 
    to promote context-specific research on the public health and service delivery aspects of autism spectrum disorders and other developmental disorders; strengthening international research collaboration to identify causes and treatments;
    
1. 
   REQUESTS the Director General:
   
   1. 
      to collaborate with Member States and partner agencies in order to provide support and to strengthen national capacities to address autism spectrum disorders and other developmental disorders, as part of a well-balanced approach, which strengthens systems, to addressing mental health and disability, and in line with existing, related action plans and initiatives;
      
   2. 
      to engage with autism-related networks, and other regional initiatives, as appropriate, supporting networking with other international stakeholders for autism spectrum disorders and other developmental disorders;
      
   3. 
      to work with Member States, facilitating resource mobilization in different regions and particularly in resource-poor countries, in line with the approved programme budget, which addresses autism spectrum disorders and other developmental disorders;
      
   4. 
      to implement resolution WHA66.8 on the comprehensive mental health action plan
      

2013–2020, as well as resolution WHA66.9 on disability, in order to scale up care for individuals with autism spectrum disorders and other developmental disorders, as applicable, and as an integrated component of the scale-up of care for all mental health needs;

5. 
   to monitor the global situation of autism spectrum disorders and other developmental disorders, evaluating the progress made in different initiatives and programmes in collaboration with international partners as part of the existing monitoring efforts embedded in related action plans and initiatives;
   
6. 
   to report on progress made with regard to autism spectrum disorders, in a manner that is synchronized with the reporting cycle on the comprehensive mental health action plan 2013–2020, to the Sixty-eighth, Seventy-first and Seventy-fourth World Health Assemblies.
   

(Third meeting, 30 May 2013)